Tuesday, 16 January 2018

I will help thee, saith the Lord


C H Spurgeon's Morning Devotional for 16th January

"I will help thee, saith the Lord."

Isaiah 41:14

This morning let us hear the Lord Jesus speak to each one of us: "I will help thee." "It is but a small thing for Me, thy God, to help thee. Consider what I have done already. What! not help thee? Why, I bought thee with My blood. What! not help thee? I have died for thee; and if I have done the greater, will I not do the less? Help thee! It is the least thing I will ever do for thee; I have done more, and will do more. Before the world began I chose thee. I made the covenant for thee. I laid aside My glory and became a man for thee; I gave up My life for thee; and if I did all this, I will surely help thee now. In helping thee, I am giving thee what I have bought for thee already. If thou hadst need of a thousand times as much help, I would give it thee; thou requirest little compared with what I am ready to give. 'Tis much for thee to need, but it is nothing for me to bestow. 'Help thee?' Fear not! If there were an ant at the door of thy granary asking for help, it would not ruin thee to give him a handful of thy wheat; and thou art nothing but a tiny insect at the door of My all-sufficiency. 'I will help thee.'"

O my soul, is not this enough? Dost thou need more strength than the omnipotence of the United Trinity? Dost thou want more wisdom than exists in the Father, more love than displays itself in the Son, or more power than is manifest in the influences of the Spirit? Bring hither thine empty pitcher! Surely this well will fill it. Haste, gather up thy wants, and bring them here-thine emptiness, thy woes, thy needs. Behold, this river of God is full for thy supply; what canst thou desire beside? Go forth, my soul, in this thy might. The Eternal God is thine helper!

"Fear not, I am with thee, oh, be not dismay'd!
I, I am thy God, and will still give thee aid."

Wednesday, 3 January 2018

Why study metabolomics in ME/CFS?


January 3, 2018


Happy new year, and happy #OMFScienceWednesday! As many of you out there are recovering from the holidays, today’s topic is metabolomics. Metabolomics simply describes a way to study metabolism – that is, through measuring amounts of the metabolites (small molecules) produced by our bodies as we convert food into energy and other molecules that our cells need to survive. Metabolomics technology is ‘large-scale,’ meaning that several thousand metabolites can be measured from a single sample of e.g., blood or urine.

Metabolomics has become a very hot topic in ME/CFS research, and one that we are involved in supporting, because Dr. Ron Davis and several independent teams have used it to show metabolic differences between patients and healthy controls. This certainly makes sense based on what we know about the disease and patients not having the energy to perform the functions they always could. Metabolism is incredibly complex and can vary a lot even in healthy individuals, so it’s important to collect as much data as possible from patients. More metabolomics data will help us to understand what exactly is going wrong in ME/CFS metabolism (or if different things are going wrong in different patients), help identify metabolic biomarkers, and hopefully point to treatments that can compensate for any defects in metabolism. That’s why we are funding studies like those of Ron Davis’ lab at Stanford and Bob Naviaux’s lab at UCSD.

To learn more about metabolomics and metabolism, check out this training link.

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Monday, 1 January 2018

They told me my illness was all in my head. Was it because I’m a woman?

Why doctors must stop disbelieving women’s symptoms and institutions must do more research on diseases that primarily affect women.


By Jennifer Brea
December 27, 2017

Five years ago, at a restaurant in Cambridge, my waitress brought me the check. I stared at the signature line, pen in hand, and froze. I was 28 years old, a Harvard PhD student studying political economy and statistics, and I had forgotten how to write my own name.

More than a year before, my temperature had spiked to 104.7. I thought I had a bad flu. After the fever subsided, I kept getting common ailments: sore throats, sinus infections, low-grade fevers. Except I would wind up in bed, inexplicably dizzy, for days on end. After the restaurant incident, I got to the point where I could leave my house only in a wheelchair. Some days, I did not have the strength to lift my head.

Seeking answers, and care, I would eventually see a dozen specialists at Massachusetts General Hospital and Brigham and Women’s. All of their tests came back normal. As my symptoms grew in complexity, my doctors started to use words like “anxiety” or “depression.” On instinct, I started taking my then fiance, now husband, Omar, to my appointments. (I thought I might be treated better if I had a male witness.) Then a neurologist gave me a diagnosis: Conversion disorder, which prior to 1980 was called “hysteria.”

In other words, it was all in my head.

So I tested the hypothesis, walking the mile from the clinic to home, ignoring the pain in my legs. Once home, I collapsed. My brain and my spinal cord felt like they were burning. I was bedridden for months, and have never been the same since.

It turned out I have myalgic encephalomyelitis, ME, more commonly called chronic fatigue syndrome. An estimated 1 million Americans have it. Twenty-five percent are homebound or bedridden and 75 percent can’t work. And yet every day I hear from patients with ME who struggled to receive a diagnosis. On average ME patients need five years to get diagnosed, and many sufferers report spending much of that time being told their symptoms are psychological. In general, women are 2 to 10 times more likely than men to receive a diagnosis of hysteria. And while globally, ME affects millions of men, 80 percent of people who have it are women.

The phenomenon of disbelieving women’s symptoms extends far beyond ME. Forty-five percent of patients with autoimmune disorders — the majority of whom are women — are initially told they are hypochondriacs before being accurately diagnosed.

We endure such waits, I believe, not because my disease is inherently inscrutable but because we have chosen not to invest in understanding it. For more than a decade, ME has received just $5 to $6 per patient annually in research funding from the National Institutes of Health, the second lowest of any disease for which NIH reports categorical funding. (The lowest, fibromyalgia, has a patient population that is 90 percent female.) Less than a third of medical schools even incorporate ME into their curricula. You cannot find answers to the questions you don’t ask — or don’t fund.

Here’s what we do know: The disease is frequently triggered by an infection, and many symptoms, including dizziness, appear or worsen when a person stands up (doctors call this orthostatic intolerance). ME patients have immune abnormalities, and some may have an autoimmune disease. We also have a defect that limits our metabolic ability to convert sugar into energy. ME’s hallmark feature is “post-exertional malaise” — after cognitive or physical exertion, every system of the body is affected so severely by symptoms that we call it a “crash.”

I’m lucky. I got diagnosed and have improved with treatment. I was able to give a TED Talk and, from bed, make a documentary, Unrest, about my experience. I can leave my house now, albeit in a wheelchair. But complete recovery from ME is rare.

When I first got sick, I thought maybe I had a rare disease — something doctors had simply never seen. Then I came to understand I was part of a community of millions living with ME who had been systematically disbelieved and marginalized. What I now know is that around the world, hundreds of millions live with autoimmune diseases. These are often complex, difficult-to-diagnose conditions that modern medicine is ill-equipped to treat. They disproportionately affect women and their incidence is rising. We need to band together across the borders of our diagnoses to build a movement for more investment in research and better care.

And in the meantime, it’s important that doctors tempted to offer a patient a psychological cause for their symptoms stop and ask themselves about the assumptions they might be making based on gender. Conversion disorder affects perhaps 14 to 22 people out of 100,000, so the chances a doctor will ever see a patient with it are not high. It would be far better, when confronted with a puzzle that defies diagnosis, to say, “I don’t know.” For patients like me, those words can be as lifesaving as medicine.

Jennifer Brea is a health activist and filmmaker whose 2017 documentary, “Unrest,” is on the short list for an Academy Award It premieres on PBS January 8.